Autism and the society What can we do to spread awareness?

Autism is a lifelong, developing disability that can impair an individual’s social interaction skills, development and behavioural growth. While it is assumed that inherited defects and environment percipitorial factors may cause autism, as of yet, scientists have not identified a particular chromosomal defect that is responsible for it.

While the social stigma that families of old with autistic children experienced is now nearly non-existent, we as a society still remain largely ignorant of autism and how to respond properly. Founder of Daddys Lanka and media personality Dr Sudath Damsinghe, who has worked closely with both autistic children and their families for more than a decade spoke about what society at large can do to accommodate children living with autism, so that they would grow to become independent members of the society.

“We need an effective parliament act, like the IDEA act ( Individuals with Disabilities Education Act) in America,” he said. While autism can usually be diagnosed before the child turns five, and with early intervention, basic skills such as communication, interaction, maintaining eye contact and sitting can be strengthened, as the child grows up, parents like to give them an education. “They are at the mercy of principals,” said Dr Damsinghe, “If the child can’t get into a good school, he will have to be home- schooled”. Dr Damsinghe stated that a strong parliament act would help these children to enter a school easily.

While the special education department at the ministry of education does help these students to find schools, the next issue is whether the school’s special education unit is effective for the individual child. Due to the lack of awareness, the teacher-in-charge of the unit also may be isolated within the school. The resources available to the teacher, the training given to the teacher may not be enough. Additionally, not every government school can offer a special education unit. “Therefore, I think that we should better empower the legal system,” observed Dr Damsinghe.

“We also need to focus on social welfare,” he stated, as families with autistic children encounter unique issues in dayto-day life. For instance, they may need to find different means of transport since it can be difficult to travel in a buses with their child, or one parent may need to be at home to give full-time attention to the child. “It is better if the family can all stay together,” said Dr Damsinghe. However, if the parents work in different provinces, if the executive officers of their place of work are ignorant of autism, it can be difficult to obtain a transfer. There are other countries that provide special concessions and facilities to these families, and Dr Damsinghe stated that while the Sri Lankan government does support these families, a stronger social welfare system is required.

Awareness is drastically lacking in the common people of Sri Lanka. The society does not know their responsibilities towards these children due to their inexperience. Therefore, the people need to be better informed of the condition.

Target group training is yet another factor that needs to be focused on. The health system, education system, the police officers, the legal system and policy makers are some members of the target group. “Is the legal system aware of autism? Are there provisions in place for individuals like this?,” are some issues that Dr Damsinghe brought up, citing several instances where autistic individuals sought the protection of the law.

“This is a vast and fast developing area with new knowledge and technologies constantly coming up,” said Dr Damsinghe, who spoke about those who are already in the field working with autism. In order to better help these children, he feels that these are improvements in the above mentioned areas would be an immeasurable help.